Originally, this blog was about a mother's experience of living with the disabling diagnosis of schizophrenia - and of trying to keep it secret. But now I have decided to open up this blog.
Read all about it here and in my book, 'Surviving Schizophrenia: A Memoir', by Louise Gillett. As a Paperback or ebook.

Monday, 30 July 2012

Sorry for the long absence. I have been on holiday with my family - although I have returned to find that we missed the best weather there has been in England all year - huh!

We had good weather too though - and a great experience all around, really. I have discovered (or re-discovered) that holidays are vital. Simply vital, for all sorts of reasons.

Anyway, I have not yet caught up with the blogosphere - in fact, after two weeks of doing almost nothing at all I am struggling even to catch up with the washing. Am trying hard to hold on to that holiday feeling though - you know, the sense of relaxation and calm and well-being and - oops, there it went!

I will blog properly soon. Just wanted to sign in quickly to say hi, and that I hope all of you out there are flourishing. It's good to be back.

Saturday, 7 July 2012

Yesterday morning I got an email from a close friend. She was concerned about a twelve year old relative of her friend - a girl who has recently been diagnosed with paranoid schizophrenia. She is on medication (we don't know which) and has already been told that there are certain jobs she will not be able to do later in life. She is apparently a very bright and able child, who has been self harming for about a year and who recently confided in the mental health services that she has been hearing voices. The parents are going with the medical opinion, but my friend's friend wonders if this can be the right diagnosis and treatment for such a young child.

I am so shocked at this story! I recently spoke to local mental health services about the impact this diagnosis has had on my life and how wrong the prognosis (that I would never get better and would always need medication) turned out to be. They seemed to understand and to sympathise - they asked lots of questions after my talk. One of the team asked me if it would have been better if my anxiety had been dealt with earlier, when I was younger.

Well, of course it would have been better, I said, if I had been helped before I had become psychotic. But I failed to specify that this would depend on the sort of treatment I had received. What I should have said was: Care, understanding, talking therapy, attempts to help me deal with anxiety - yes. Drugs and a diagnosis - obviously not. But did I perhaps not spell this out clearly enough? This girl is local - and I cannot help wondering whether some of the people treating her were actually at the meeting where I spoke about my story.

How can anybody think they are helping that child by treating her in this manner?

Whenever I talk to mental health professionals about my experiences I am told that things are so much different now, so much better now... Somehow I doubt it.

And this email came just before I was due to go to another meeting, held by the Peer Network I am working for, attended by people all over the country, about recovery. My time there was tainted by the thought of this poor child - struggling with emotional distress, told that she is a paranoid schizophrenic. That she has a brain disease that can be solved with medication - oh no, not solved, because she will never get better, there will always be things she cannot do with her life so she might as well give up hope right now.

What are we doing with all these meetings and talks when this stuff is happening around us regardless? Are we helping to implement change at any level? Or is lip service simply being paid to the experience of people who have been through the system and the attempts we are making to change it?

I have already mailed my friend, linked her to all the information I can find - all the wonderful sites I already know about, all the things I know about emotional distress and the best treatment for it. If anyone out there has any further ideas of how to help, please let me know. Obviously, it is the parents that will need convincing - and if they have been struggling with a child who has been self harming they are probably desperate to help and probably like most of us they trust the medical professionals to know best. My friend's friend is just a relative - but maybe if he has enough information, he will be able to convince them to consider alternative ways of looking at the problem and of treating it.

To let a twelve year old girl enter her teenage years convinced she is a paranoid schizophrenic and taking dangerous drugs to treat this 'brain disease' seems to be to be nothing less than child cruelty. I can hardly believe that such things happen in a civilised country, and so close to home. I am fuming! I do hope that nothing I have written here contravenes any confidentiality - I have tried not to give any personal details. I don't want to make things worse for anybody. But I am proud that my friend asked me for help on this matter, and I want to do the best I can to provide that help. So please, anybody with any ideas, post them here and I will pass them on.

I am sure of one thing - I am going to finish my recovery book as fast and as well as I can now. I write a lot better than I talk, and a lot more clearly - and if even one person reads my book and gains any sort of knowledge about how better to treat young people with mental health issues then it will have been a job well done. So that is going to become my absolute priority, and all my efforts are going to go into that book until I have written it to the best of my ability.

Wednesday, 4 July 2012

I travelled to Brighton on the train on Monday, for a Time to Change training day. T to C, for those of you who don't know, is a charity which works to reduce the stigma around mental health conditions (catchphrase: it's Time to Talk'). It is run jointly by Mind and Rethink and has a fair amount of public funding. It is a worthwhile cause to be involved with, so I signed up some time ago to be a Time to Change Champion. This event was right up my street as I am particularly interested in learning how to speak well in public: I have an engagement coming up, of which more in due course.

Anyhow, I did not come home eloquent, or changed in any other major way. We were not taught to project our voices, or emit an air of easy confidence, or any other 'tricks' - although I do want to learn these things, I will have to look elsewhere for that sort of an education. I think it is likely to take longer than a day...

We did consider the strength, skills and knowledge that we already have, and how we can utilise these to speak publicly about our experiences. We discussed the importance of only saying as much as we feel comfortable with. We talked about presenters whose styles we admire, from Lauren Laverne of the Culture show to various newsreaders and Sue Baker, the Time to Change director. The most important thing they had in common, as far as I could make out, was that they are all calm and relaxed while communicating.

The day passed very quickly. At the end we gave a two minute presentation, and I was suprised by how articulate some (most, in fact) of the other Champions were. I was self-critical as usual - I tend to speak to an audience in quite an abject manner, almost as if I am pleading with them to like me - I need to take control of a situation far more. I did read out one of my poems, which I was nervous about, because I realise that reading poetry during a talk can seem a bit desperate, but actually that was the bit that came across best - perhaps in part because I already had it written down. So I think perhaps I will try reading from a script next time I give a talk - something that feels a little artificial but may in fact suit me best.

Anyway, it was all helpful, and empowering of course. I went to a new city alone and found my way around - and actually it was more complicated than I had anticipated as there was a tree on the line on the way home, which meant two unscheduled changes, which I managed without a hitch or a concern. And of course I met some more new and interesting people - I am discovering that I enjoy meeting new people and learning their stories, in fact it is one of the best aspects of my new more active existence. So far, so fab.

I had my last ever session with the CBT therapist yesterday. I think that has made it a round dozen in total. I felt a little emotional saying thanks and goodbye - it has been so helpful having someone to offload to, who I can trust to give me the answers I need. But I don't want to be dependent on anybody else - it would be too easy to get that way. And I know that I am heading in the right direction, and that nobody can keep propping me up all the way there - and also that if I do ever need help again, I can self-refer back on to the IAPT programme (although I may have to wait six months or so for treatment...). I am hoping, actually, that one day I will be in the position to be able to afford private therapy if I should need it.

What else? Oh yes, yesterday was my day for talking to the chap whose book I am ghost writing, and that went well too. He is so grateful for my help, which is touching, and again of course he has a story to tell, and since I am being paid to listen I do so very attentively. Which is good for me funnily enough - to sit quietly and listen, rather than taking a more active part in the conversation, is something I should do more often.

Enough for now. Am off out to get my eyelashes tinted. A vanity which outraged my eldest daughter when I told her last night, 'What do you want to do that for? That is RIDICULOUS!' I was shocked by the strength of her reaction. Anybody would think I was going to have botox. Or a nose piercing. Or a tattoo. But I suppose we all have our own limits - mine is minor cosmetic enhancement but cosmetic surgery must seem just as acceptable to those who do it. Anyway, I digress. I really am off out now.